May. 6, 2015

Posted by Jennifer Huron

In a race against time, Glenn and Cara O’Neill have quarantined their family for nearly one year to try and save their daughter, Eliza.

Eliza, 5, has Sanfilippo Syndrome, a rare degenerative disease characterized by the body’s inability to break down complex carbohydrates, resulting in a build-up of cellular waste in the brain and central nervous system that causes neurological and developmental deficits. Their self-isolation is an attempt to protect her from illness and immunities that would prevent her from participating in an upcoming clinical trial that could save her life.

Glenn and Cara are courageously and bravely blazing the path to find a cure for Sanfilippo. Within two months of Eliza’s diagnosis, they had founded the Cure Sanfilippo Foundation and were on their way to raising more than $2.2 million to finance research. They also advocate for newborn screening as part of early diagnosis.

To raise the money, Glenn and Cara launched an online giving campaign supported by a plea for help in the form of a personal video. They recall how vulnerable, exposed and uncomfortable doing the video made them feel, but “we were going to do whatever we needed to do,” says Cara.

The video went viral. Prior to this, Glenn had done no more than 10 Facebook posts in the last three years and he had no Twitter account. Today, they have presented their experience and social media expertise to other parents and nonprofits at major conferences and on national TV.

Of their supporters’ generosity, Glenn says he “always knew people were good, but I never expected all these types of angels that would just give large portions of their lives to others, like us.”

Thinking about how far they have come and where they hope to be, they say they “are hoping for the fairy tale ending not just for Eliza, [but] for all the kids out there and the people who have helped us. We feel like we are really close.”

NORD is honored to tell Glenn and Cara’s story as part of the 2015 Portraits of Courage celebration.